Monday, February 3, 2014

Weekend Update

Monday Update...

Delaney had a good night last night. Mommy and Daddy did a blood draw this morning again and Daddy drove Delaney's blood out to Kaiser Walnut Creek this morning and while Daddy was gone Delaney had another nose bleed. It ...was more manageable this time, but still worries us since she just got platelets yesterday. Her blood work came back and we were given the ok to stop her nightly injections of GCSF, which helps increase her white blood cell count, and one of her antibiotics (she is currently on 4 antibiotics). Most of the day was spent chasing brother around and playing. Delaney even played dress up with a ballerina costume. This made her so happy. Delaney was feeling good and her counts were up so we took a drive over to Grandma and Grandpas house to look at the animals from the car. She saw some sheep, and cows but especially loved seeing all of the horses. Mommy and Daddy still go through their ups and downs. Everyone at the house is just flat out exhausted, especially our FIERCE little fighter. She fell asleep at 5pm tonight and hopefully will sleep through the night, but Mommy and Daddy are prepared to be up early or all night. Thank you for all of the prayers, love and support. As always.....GO TEAM DELANEY!!
"And though she be but LITTLE, she is FIERCE!"See More

Sunday Platelets at UCSF

We knew we were in for a long night last night considering Delaney went to sleep around 6pm. But with her body recovering from chemotherapy and working hard to graft the stem cells back into her bone marrow, we al...so knew she needed rest and lots of it, so we let her sleep. But Delaney was up at 1130pm and we could not get her to go back to sleep until 1am. Mommy and Daddy lost out on much needed rest and Delaney missed out on some of her formula feeds for the night. Delaney then woke up just before 6am to start her day. Just as the day was starting to get traction Delaney has another nose bleed. The nose bleed was not as bad before, we were able to stop it sooner. Mommy called the BMT to advise them that Delaney had another bloody nose again, (she was just transfused with platelets this past Thursday). The BMT doctors said that blood labs should be taken in today. So blood was drawn, taken to the lab, and her counts came back and her platelets were low again. Her count was 32, and we have come to recognize that when her platelets drop in the 30's she becomes symptomatic with nose bleeds and needs to be transfused. So it was off to UCSF for more platelets today, not what we were expecting but we needed to get Delaney, what she needed. Mommy and Daddy would rather be proactive rather than reactive in Delaney's care. At UCSF things were smooth, Delaney was happy for some time, but soon became worked up and wanted to go home. But she got so worked up she vomited all over Daddy. It was a rough remainder of the stay at UCSF. However, Delaney was discharged later, and was happy and excited to go home. The rest if the night at home was extremely busy. Among every thing else Delaney also needed her Broviac dressing changed before she goes to sleep. It has been a long very stressful day for everyone. But we keep at it, just as Delaney does. Delaney will have another blood draw tomorrow to see her blood counts again. Thank you for prayers, love and support. As always....GO TEAM DELANEY!!!
"And though she be but LITTLE, she is FIERCE!"See More

Saturday Update,

Delaney steam rolled through another day. She was up early, napped early, and went to bed early, she was asleep by 6pm. But in between she was playing hard, she wanted to be everywhere, chase brother, and most importantl...y she wanted to be independent. This was great for Mommy and Daddy to see, to see her so active and happy, they loved it. By allowing Delaney to be as active as she can be and enjoy being a 2 1/2 year old child, that means walking with her around the house hunched over for hours on end (she still cannot walk on her own since her brain operation), pushing one of her 12 different medications literally on the run as well as formula. But we try to give her and allow her to take pleasure in some of the everyday things that are easily taken for granted. It was a good thing grandma and grandpa were able to be at the house to help Mommy and Daddy today. Days such as these can sometimes mask worries, bad memories, and Delaney's current prognosis, but it does not mask how fiercely Delaney works on her daily life and obstacles. Mommy and Daddy are so proud of her resilience. Delaney is still having to contend with a side effect of Thiotepa, where she has diarrhea, 5 plus times per day since her first admission at UCSF back in December. Delaney is still receiving her GCSF injection nightly to boost production of her white blood cell count. We hope some time this week her counts will have recovered enough that we may stop them. It was a great day, she is the strongest, and most lively we have seen her in quite sometime. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!